Living in the Upside

Almost Ready

2011-11-18T16:26:00.002-05:00

I am in the final editing process of the book titled Seriously God, How Do I Sit on the Toilet? I love that title. Wow, it really does take time to work up a good title. I have been through so many as evidenced by the number of revisions with different names all in the same folder marked 'Memoir.'

I emailed the manuscript to a good friend. I know that my writing style is casual. I think that can be forgiven. The difficult part though is the frequent switching between today and the past. The chapters are inconsistent in size as well. I hope that it is considered quirky -- which is a good word to describe myself. She hasn't responded yet but that could be good news. Perhaps she has the flu and not up to reading this incredible literary masterpiece. HAHAHAHAH Or perhaps she is filed in the circular file. Either way, I am moving ahead on the assumption that the work is good. Yes, I know what they say about assumptions but what the heck.

I joined Writer's Market and began the process of finding a publisher and/or literary agent. I am leaning toward agent. Perhaps that is the route I need to take this time. They all take email submissions now. Much easier than my last book with the reams of paper and stamps. Now you receive immediate rejection via an impersonal email.

I will let you know how it goes.

But here is my first paragraph to my query letter. I think I may have nailed it:

As a cancer survivor, mother of an autistic child and woman of faith, I experienced life from the critical to the hilarious. In my 145,000 word inspirational memoir with the proposed title, Seriously God, How Do I Sit on the Toilet?, I chronicle my survival of cancer using the lessons taught my autistic son.

The experts all want copy that could be on the back of the book. Concise, smart and a reflection of the work. I hope I got it right!

Keep you posted!

Yes, It has been three months . . .

2011-10-06T07:55:00.002-05:00

I was recently asked to give a witness to the church's youth group about the meaning of motherhood. Before I accepted the challenge, I verified that they wanted me. I am not a traditional mother. Never wanted to be. I am a stay at home mom by default. But they said it was OK. They still wanted me to give the talk. I am not sure who was crazier -- them or me.

I did give a witness. I spoke about the unconditional sacrifice of motherhood. Just like Jesus gave the unconditional sacrifice of his life. I felt it went pretty well.

The upside (pun intended) was that it reinforced that the decisions I have made were the right decisions at that time. I do not regret staying home for Adam. And I am grateful for the time I have at home now.

Not so grateful though that I don't need a break. I asked, and Jim gave, for a week away by myself. I am really excited! After the the good (but stressful) news from MSKCC in August; sending Megan off to college and just the everyday grind of being home; I really need some time to myself. 24 hours a day, seven days a week of just me making my own decisions. Heaven.

I am still writing. Actually, plan to finish the book on my trip and then prep it for submission. I am very close to being done. Yipee!

When not writing

2011-04-30T13:48:00.004-05:00

I imagine creativity as ebb and flow. When the creativite energy flows you can barely contain the ideas. When the energy is low, you are drained and unable to focus. At least that is how it works for me.

I have a great deal of creativity energy but it is often used in ways that I can not control. Such as reviewing my child's IEP; helping my daughter analyze Shakespeare; plotting the map for vacation or working on anew recipe. If I am not careful then I can use all that energy up and there is nothing left for my own creative projects.

Years ago I took the Myers Brig test. One of the questions was where do you get your energy? Do you get energy from being by yourself or with others? I was clearly in the self category. I know that if I don't spend some alone time I will crash and burn like an alcohol coming off a night on the town.

So lately I have spending alone time. And the ideas are coming so fast I can't react quick enough.

I am uploading one of my projects that is beyond writing. I have been working with gourds. Bleaching, carving, painting and making fairy houses.

Yup, fairy houses. I created a two story house, village shop and playground. I hope you enjoy them!

Still Writing

2011-03-10T21:59:00.002-05:00

I have been writing daily since I last posted. So far there are 15,000 words. Only I don't know if what I am writing is worthy. I suppose that is every writers nightmare or fear or angst or whatever you call it.

So I did ask a friend to read the first three chapters. Now I know that a friend may not give me the feedback I need -- but I'm pretty sure that she will give me the feedback I want. No, I'm kidding. She is actually the perfect reflection of my projected audience. She is also scrupulously honest. If if does not meet her standards, then I know I should scrap the project or start again.

In the meantime, Writer's Digest has sent a notice for submissions for their annual contest. I am considering submitting part of my manuscript. I have some time to prepare a submission so here is hoping.

Light of the World

2011-02-07T15:40:00.002-05:00

Yesterdays Godspell, Matthew 5: 13-16, is one of my favorite passages. The salt of the earth and light of the world immediately inspires the song from the musical Godspell. Which immediately leads to other Godspell songs and then of course, Jesus Christ Superstar songs. Today, of course, those songs are burrowing through my brain like a worm.

While I have written about my faith here, I am hesitant to write too much. I have never been comfortable proclaiming my Christianity. I have many friends who are evanglicals and every conversation is another discussion of their faith.

I have felt that my faith should be present in word but more present in action. I am fascinated by other religions and their traditions. I have a margin of error in my soul that perhaps they are onto something as well. If they follow the tenants of the ten commandments in their own way, then isn't there a chance for them in heaven as well? I truly don't know but I do know that preaching to them is not what works for me.

Anyway, I thought I would take a few moments and wrestle with those thoughts as I continue to work on my memoir. I am still not sure what the line is that I have to walk. I only know that inspiration is coming daily. I am sure that God will send me a message soon.

Finally Friday and I'm Ready for Monday

2011-02-04T10:41:00.003-05:00

Three snow days in a row this week. Five people with cabin fever. Roads are finally passable and ice is still covering everything. Today I am sitting still and enjoying the quiet. There are no sounds of arguing; no TV noise; no Wii beeping. Just blissful quiet. I am so ready to pass by the weekend and move into Monday - some more days of quiet bliss!

On Monday I finished a substantial part of the book. I was able to craft an introduction. I found a workable method to weave the blogs together in a meaningful, humorous yet substantive way. I only hope that the time and order of blogs makes sense. I hope that the writing is meaningful and worthwhile.

I want this book to humorous, spiritual yet not trite or preachy. I hope that the book is not perceived a evangelical or preachy but quietly, dignified witness.

A fine line I need to walk and in the long run it will still be up to the reader to decide.

Not Again

2011-02-03T19:59:00.000-05:00

Third snow day in a row. Enough said.

Balmy Night

2011-02-02T09:03:00.002-05:00

3 am and I am walking around outside. This is how crazy our weather has been. 34 degrees and it feels balmy outside. I am in my pajamas with only a crochets shawl around my shoulders.
The world was covered in ice. What we couldn't figure out was the rain? I had opened a window and heard the pitter patter of rain. Yet I couldn't really see it against the street light. So outside I went with my husband for support. Don't forget I am still jerking all over.
The trees were frozen to the ground with the weight of the ice on their branches. Bushes were smashed and broken from the weight. The entire glittered like the inside of a snow globe. It was surreal experience. I felt I walking on a movie set and waiting for the director to yell cut.
The sound of the rain came from the melting ice on the trees. It was only 34 but of course freezing is 32. What we heard was the ice melting and hitting the frozen icy snow.
I had visions of the kids slipping and sliding outside the next day. The world a frozen Popsicle. Yet when I woke up a few hours later, it was all gone.

Legal Stuff

2011-02-01T10:00:00.001-05:00

I was browsing articles on the Writer's Digest website when I was struck with a disturbing thought. Since this is a memoir, do I have to worry about legal stuff? Do I need to worry over writing about real people -- doctors, nurses, friends and even my family? Am I setting myself up for a lawsuit?

There are some tests for this that I can apply as a writer. First, am I writing about real people? Yes, I am writing about real people. In many cases, I don't even know their names. They are just people I sat next to in a waiting room. Or that faceless nurse in post op surgery. Or the priest hearing confession in NYC? I don't even remember the name of the parish. But essentially yes, they are real people.

Are they recognizable to readers? Probably not. In fact, I don't know if I would even recognize them again. Except for the surgeons. If you really were a creeper, you could find the surgeons online as they are very specialized. I can change the name but not always the description. I will need to step carefully there.

Am I spouting indisputable facts? Nah. Only opinions. Opinions influenced by drugs, pain and a warped sense of humor. I am sure that anyone could dispute that.

Are you disclosing private, possibly embarrassing information? Yup, absolutely. Very embarrassing. I believe I mention the anus a few times. Breasts. Moods. Tubes coming out of everywhere. Yup, very embarrassing. Who cares? It's only me being embarrassed. And anyone who has had any kind of surgery knows the embarrassment I'm talking about.

Disclosing a problem in the community or disclosing a crime? Unless you count the quality of thin hospital robes, nope.

So I guess I am 50/50 on the legal. I better do some more research.

Goal for the Week

2011-01-31T09:27:00.003-05:00

Since my proclamation last week that I am looking into writing a memoir, I see the need to challenge myself. I need to make writing a priority. I need to write everyday like a job. I must get up in the morning and spend time writing.

With that in mind, I am challenging myself to write a daily blog this work week. Five blogs in a row. What about -- who knows?

Writing is a real issue for me at this time. When it is cold and I am fatigued, I shake. Not the teeth chattering shake but the cerebral palsy jerking. My speech also alters. Thoughts come into my head but I can't literally say them. Sort of a form of apraxia. It is a form of paraneoplastic syndrome. The white cancer cells from the metastasis attacked my nervous system. So I have permanent damage that comes and goes in cycles. Extreme cold is one of the triggers.

I am hoping that this writing exercise will keep me from loosing it mentally as my body jerks and shakes through the day. I need to convince myself that mind is still in this deteriorating body.

Hey, it must be working because an idea just popped into head for tomorrow's blog!

Memoir

2011-01-25T15:38:00.000-05:00

I feel compelled to write the story of the last decade. Even longer in fact. Yet I am puzzled with how to start. Should I jump around in time, go backwards or forward. Should I include only the cancer bits or should it be a story about building – building from fibro to now. How do I include the information on faith? Why am I hesitant to include the faith parts? Does that go back to a fundamental show don’t tell philosophy I grew up with?

Perhaps I should chronicle my writing on the blog. Write about how I make the decisions. Decisions like chronology, voice and truth. Talk about looking at the past and seeing it through a different filter. If I remember at all.

I like to write in short sentences. Language that is simple and direct. Rarely do my sentences follow the traditional noun plus verb format. I write like I speak. I write like I talk. Does that bring me closer to the reader? Is it a more intimate experience? Or just extremely juvenile and annoying?

Even by putting these sentences on paper, I am committing. That is the other fear. Committing. If I don’t tell you then I don’t feel compelled to follow through. Or if I fail, then you wouldn’t know because I never told you.

Big questions. I still don’t know the answers.

How many times?

2010-02-03T15:37:00.002-05:00

How often can a person resolve to start over? Do you get one do-over? Or is every moment a chance to change?

I believe in the moments. Resolve is a constant. Not a one time decision but a constant need to be determined. Therefore, starting over and change has to have the opportunity to occur when your resolve begins. Everytime it begins. Over and over.

Spur of the moment decisions often look weak in the light of day.

Duality

2010-01-19T03:05:00.002-05:00

This weekend was a perfect example of the duality of my life. For many people this is common. For me, this was an extreme circumstance that illustrated the differences.

We had a four day weekend. The kids were off Friday and Monday. Looking forward, we decided to visit a college with my oldest daughter. Due to her college preferences and scheduled visitation days, Ohio University was first on the list. My Alma Mater. We did the trip in one day and spent several hours touring campus. We also spent a good hour with an admissions adviser in her desired field.

Overall a productive day spent with a highschool junior and campus of college kids.

Today, was my youngest son's big birthday party. The kids are allowed one big party in elementary school. This was the big one. We scheduled it at Pump It Up, a large inflatable party center. 25 eight year old kids from school and the neighborhood. I have over 300 pictures from three different cameras and most of them are a blur. We had a fantastic time.

Overall a great day spent with first graders.

Hence, the duality of two lives. My head is spinning.

STR

2010-01-14T14:25:00.002-05:00

I don't know Ingrid but my mother died from a stroke. I clearly remember her first stroke. We were coming down for the weekend and when we arrived I was struck by her flat, expressionless face. She insisted she was fine and my father seemed unfazed. We had dinner and went to bed. My mother contributed a little but seemed distant and quiet. The next morning, the same and worse. Right after breakfast, I insisted that we go to the hospital and we found she had had a stroke. If only I asked her to smile and follow the STR strategy. We may have saved her. Less than two years she laid down for a nap and had a massive and final stroke. I knew the signs of a heart attack but I never the signs of a stroke. If only if only . . ..

INFORMATION EVERYONE SHOULD KNOW........................
Blood Clots/Stroke - They Now Have a Fourth Indicator, the Tongue

STROKE - Remember the 1st Three Letters....S.T.R.

STROKE IDENTIFICATION:

During a BBQ, a friend stumbled and took a little fall - she assured everyone that she was fine (they offered to call paramedics) .she said she had just tripped over a brick because of her new shoes.

They got her cleaned up and got her a new plate of food. While she appeared a bit shaken up, Ingrid went about enjoying herself the rest of the evening

Ingrid's husband called later telling everyone that his wife had been taken to the hospital - (at 6:00 pm Ingrid passed away.) She had suffered a stroke at the BBQ. Had they known how to identify the signs of a stroke, perhaps Ingrid would be with us today. Some don't die. They end up in a helpless, hopeless condition instead.

It only takes a minute to read this...

A neurologist says that if he can get to a stroke victim within 3 hours he can totally reverse the effects of a stroke...totally. He said the trick was getting a stroke recognized; diagnosed, and then getting the patient medically cared for within 3 hours, which is tough.

RECOGNIZING A STROKE

Thank God for the sense to remember the '3' steps, STR. Read and Learn!

Sometimes symptoms of a stroke are difficult to identify. Unfortunately, the lack of awareness spells disaster. The stroke victim may suffer severe brain damage when people nearby fail to recognize the symptoms of a stroke.

Now doctors say a bystander can recognize a stroke by asking three simple questions:

S *Ask the individual to SMILE.
T *Ask the person to TALK and SPEAK A SIMPLE SENTENCE (Coherently)
(i.e. It is sunny out today.)
R *Ask him or her to RAISE BOTH ARMS.

If he or she has trouble with ANY ONE of these tasks, call emergency number immediately and describe the symptoms to the dispatcher.

New Sign of a Stroke -------- Stick out Your Tongue

NOTE: Another 'sign' of a stroke is this: Ask the person to 'stick' out his tongue.. If the tongue is 'crooked', if it goes to one side or the other, that is also an indication of a stroke.

A Week of Exhausting Fun

2010-01-07T18:34:00.003-05:00

We spent an unusual week over New Years. We went to Washington DC. For many people this may be a weekend trip or a pass through on the way to somewhere else. We spent five full days there and still only scratched the tip.

What a great week! We toured the capital, Library of Congress, Archives, Smithsonians, monuments, and much more. Each of us had a list of what we wanted to see and made time for each other. At every location there was more to see than intended. Never ending exhibits, interactive computer stations, docents and on and on.

The best part was that almost all of it was free. We did pay a small processing fee for tour the Washington Monument and pass the line at the Archives. My husband was able to find a great room at a Residence Inn on the metro line. We parked the car and only used it once. The rest of the time we rode the metro. Breakfast was included. For three days, they served dinner as well. A great savings for all of us. We had a large breakfast and didn't need to eat until dinner.

The only down fall was the walking. Oh did we walk. Miles and miles every day up and down corridors, building to building. Oiy, what tired feet! We did notice a real lack of benches and garbage cans. Must be new security issues.

I have come back a real respect for our country. I am so proud to be an American!

For a Few Pennies

2009-12-20T05:23:00.004-05:00

My husband can have fun on a dime. Or in this case, the cost of gas alone.

In the past 24 hours we have had a whirlwind of activity. Not the kind you normally get with shuttling the kids here and there. Real life family fun activity.

We visited Heather Ridge and visited the Polar Express, Santa, cookies and holiday lights. Free

Attended a concert at KSU Stark. Free

Attended another concert at UA. Tuba Christmas. Megan played! Free and great fun.

Geocached with the family all over the University of Akron. Free.

Dinner with coupons at the Spaghetti Warehouse. Less than 10 per person. Stuffed.

Another concert at Nativity church. Christian rock band. Free.

Whew. Are we beat!

So why can't I sleep?

Make A Difference

2009-12-17T11:46:00.002-05:00

Here in Ohio, we have worked for a long time in reforming insurance especially in concern with autism. Most states have a requirement that autism can not be excluded from insurance coverage. That is not the case in Ohio.

When Adam was only a toddler, I organized a Town Hall meeting with our elected officials including State Representatives and State senator and families with children with autism. We also arranged appointments in Columbus with our elected officials to discuss help for our families.

Recently the House of Representatives pass HB 8 addressing insurance and autism. I have not been directly involved with lobbying for many years so I was unaware of the bill until a few days prior to it going to the floor. Let me back up, I used to work for the chamber of commerce. For more than ten years I visited Columbus working with legislators and business concerns. I left when I reached burn out.

So what does this have to do with making a difference?

When I received word that HB 8 was going to the floor, I eagerly wrote several emails. Simple really. I spoke about my previously not supporting legislation that would burden business, but after experiencing the cost of raising a child with autism, I have changed my mind. As many of you know, therapy for a child with autism can reach into the hundreds of thousands. Bankrupting families.

The good news is that the bill passed in the house. The better news is the personal phone call I received from my State Representative Scott Oelslager. He called me late on Friday night. Whether or not he remembers from my chamber days (that was more than ten years ago) he was moved by my email. He also remembered the town hall meeting from years before. A republican, he was one of the few that voted for the bill.

I have sat here the past few days not sure what to think. First, thank Rep. Oelslager for supporting our families. Second, we do make a difference. I only spent a few hours on the emails. And what a difference it made.

Now it's time to work on the Senate.

Fear

2009-12-08T22:39:00.002-05:00

Several years ago I laid in hospital and spoke with the hospital priest. I remember as if it were yesterday. The priest was african american with a thick accent. He was so spiritual and inspiring. I certainly need it at the time. I had been waiting for the biopsy results and was in the hospital due to a severe drug reaction.

Back to the priest. He told me that fear was the work of the devil. Of course he phrased it more elegantly. But the essence was that God would not work through fear but through love. He said that to give in to fear was to concede to the devil.

That may seem simplistic but for me it was quite a revelation. Fear was the work of the devil and his way of keeping us from drawing closer to God.

If you think about it, he's right. To live in His love is to be love. To love others, yourself and to live in hope. Fear is the product of worry, concern, hate and lack of faith.

I bring it up because I have a good friend who is on the brink of great success and she has a fear of success. I get that. Success means accountability. And it also plays into our shared history of Catholic guilt.

Her fear reminded me that fear doesn't come from fear of health like mine, but from other places as well. It reminded me that fear can spring from anywhere and we really need to watch for it.

Fear versus hope. An eternal struggle.

Good News

2009-12-08T22:37:00.002-05:00

I talked with my physician today. They compared the size of the mass to the last exam and there appears to be no change in size. YIPEE! I scan again in six weeks to verify but overall, everything looks great.

I couldn't be happier. This is the first time that a suspected mass is actually nothing.

Wow, does that feel great.

Fifteen Days

2009-12-02T22:06:00.003-05:00

When I see the date November 16 since our last post, I marvel at how quickly time has passed. I have since been to NYC, I have good news and OK news. The good news is that my scans are clear. The lungs look good and the rest of the body is clear.

Neither of the surgeons seemed overly concerned with the mass in the uterus. So I am feeling confident in their confidence.

Yet they are still cautious. I had more tests yesterday.

Ready for a story?

I had a inter-vaginal ultrasound. For many women in the world, that might sound like a good time. In case you wonder, it is exactly like you think. A wand up there. If you think about it, it's paid for by insurance companies and delivered by a professional. In some states that would be illegal.

When I reached home, the cramps started. I didn't know it would happen so I was surprised. Women are truly not meant for something that big for that long. Regardless of what you heard in sex class.

I wondered if I should have left a tip on the counter.

Good Friends and Reflections

2009-11-16T12:22:00.003-05:00

I just spent a nice few minutes with my friend Shiela. I also spent an hour in quiet reflection in the Adoration Chapel at Queen of Heaven.

Why the big deal? Despite the anxiety and worry that I have in the back of my mind, I really feel OK about everything. Maybe it is just shock's way of coping but I am OK with that.

I am very calm and positive. I am taking the right steps towards this appointment and occurrence. This is not the end. I am not going to believe that it is.

I will keep praying, believing and hoping. I hope you do as well.

Lengthy, Depressing yet Necessary

2009-11-14T01:39:00.003-05:00

I reached my surgeon in NYC, the head of the department, and he agreed that the spot was worth a second opinion. He recommended a gynelogical oncology surgeon. So next week I am off for a full check up. I do not know what he will recommend but there is one thing I do know. If it is cancer, my options are limited.

I truly believe that this mass is not cancerous. Yet knowing the aggressive nature of this disease I know that I need to be prepared for the worst. Perhaps it is because of my father's funeral. Or that I recently found (by accident) my funeral file from last year. Just before my big heart surgery I made initial funeral plans.

In order to keep positive I need to stop thinking about my funeral. So I thought that writing it out would remove it from my mind. Then I can focus on thoughts of hope.

So you don't have to continue reading but I do ask for your prayers. They made the difference before. I know they will now.

I want an evening viewing just before a mass at Queen of Heaven with Father John Zapp from Holy Spirit Parish in cooperation with Fr. Dave from Queen. They each have aided and guided me over the last few years for which I am grateful.

I would love the Sent Forth band to play for my funeral. I would like the traditional songs like Be Not Afraid to be played. I also would love to have Kind and Generous from Natalie Merchant.

I want everyone to dress in bright colors. Do not wear black. This is a celebration of my life. Remember where I will be and I will be there for you.

I want to be cremated and my ashes scattered over the ocean. I would love to have all of my family together for a weekend -- Jim, Megan, Sarah and Adam, brothers, sisters, aunts, uncles and in laws - at the beach on the Outerbanks. I want it to be a party with food, drinks and kids running like crazy. At some point, sprinkle my ashes over the water and have a drink. That's my kind of wake. Sun, sand and alcohol.

I was right. I do feel better. Thanks for listening.

Reminders of Grief

2009-11-01T21:44:00.004-05:00

Your life can change in an instant. Yes, it seems trite and repititous. Yet the very simplest of statements are often the truest.

My father died yesterday. Peacefully and without pain after years of pain and loss of dignity. We re all feeling a strange emotional mixture of relief and grief.

I think because of his death and my recent brush with another mass have made think of the how precious our time is on earth.

Actually, we can think of that as death's gift. Death as a reminder of life.

Huh.

A Little Stumble, So I Hope

2009-10-27T21:52:00.002-05:00

Today I had my annual ob/gyn exam. I mentioned some difficulties that I thought were attributed to menopause. The doc thought otherwise.

He did an internal ultrasound - yes, that is as icky as it sounds. Despite the jokes that are leaping to your mind. And he found a fibroid.

OK, that is not a big deal in itself. Unless you pair with my history of little lumps that turn into big deals. The docs say, hey no problem let's wait and see. The next thing you know you are on the table having open heart surgery.

So here it goes again. I am trying to not to think of the obvious like chemo failed and this is a new tumor. That concept is just too scary.

I am asking for more prayers. I know I will be praying.

Is it just keeping busy?

2009-09-24T19:45:00.002-05:00

In the last few months, I have been working hard on the house. I refinished the deck. I wanted to completely redo it but I was limited by own strength and fatigue. I work for a few minutes and rest for hours. Taking that into account, I challenged myself to projects that were easy for me to complete as well as cheap. I wanted to spend little money with a focus on reusing items. Especially items that I had here at home.

The deck turned out wonderful. I rented a sander and a great time sanding the deck. A real Tim Allen moment. I wanted to grunt and drink a beer at the same time. I then purchased church pews for minimal money (the church was putting in new ones) and anchored them to the deck. I coated them with poly and drilled holes for drainage. But the best part was the table I made.

Using the kneelers and missilette holders, I made a table. A custom, unique patio set. I will brag, it looked very cool.

Now I am working on the bathroom. I fixed the leaky shower, replaced a faucet and am laying a floor. Of course, I am using easy peel and stick tile. And of course, it is taking forever to my children's' chagrin. They really want to use the bathroom.

But the bottom line is, I'm doing it. I am moving forward, feeling optimistic and getting stronger every day. With very little thoughts on cancer. Yippee!

I am also writing up our adventures on my website www.autismtravel.org. I love the therapeutic feeling of blogging.